Hospice care, trying to understand how it all works. Any advice?

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:My mother is getting close to her final days and at the point where she is not wanting to eat (two days now), and sleeps mostly. I cannot even get her to sit up long. I am a little frustrated and don't know what to expect from Hospice. I feel like I am always reaching to them. The nurse comes twice a week, and CNA to help with bathing. But no one calls (the social working has not even checked in, and only comes out once a month). Today I asked the triage nurse what are the signs indicating it was time for a hospital bed. Not that responsive. When ordering the bed, I ask her what kind of assistance I can get to understanding how it works and if there will be someone to show me how to handle her in bed. She very slowly responded that the CNA can do that. As things Happen I have to call to find out how to do things. Is this the way it works? Appreciate any advice. My father passed many years ago suddenly and I have no experience with this. Am I being too needy?

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My Mom was diagnosed with Stage IV gallbladder cancer that has metastasized to her liver, esophagus, stomach, and lymph nodes. We were told it was very aggressive and she probably had 2 months left. She also has dementia. The gastro and onocologist recommended Hospice and they have been wonderful. They supplied a hospital bed, bedside commode, oxygen, wipes, creams, pads, adult protective pants, everything that I have needed to keep Mom comfortable. The intake nurse was here shortly after we got home with Mom and the social worker was here later that afternoon. They explained everything in detail and gave me a binder with information and the number to call. I have had a nurse here 3 times a week and a CNA twice a week. She would have come more often if I wanted her to. Mom has deteriorated to the point that she was placed on this Hospice protocol list yesterday. The CNA told me today that she would be here everyday and so will the nurse. The social worker came by and said she would be here once a week unless I needed her more often. Tonight Mom is in the final stages and the night nurse called and told me to call if I needed anything at any time. They entire staff has been very responsive to all my questions and Mom's needs. We found out that she can't take Atavan or Haldol, they have an opposite effect on her and they had no problem with me not using them. I can truly say that this particular Hospice has made this a lot easier for me to keep Mom at home where she wants to be. I wish that everyone had a Hospice as caring as the one I have.
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Oh,yes, just a diuretic pill - they probably needed to give potassium with it! You have to eat a fair amount of bananas for that, which is fine if you really love them. And magnesium. I guess they thought extra fluid would make him uncomfortable or something. You'd think they could have explained better and done those simple mineral supplements. (You'd think there is some kind of rule about using common sense, but then you'd be wrong..)
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I don't remember the name of the medication but it was either a blood thinner or water pill (been too long ago now). It was causing his muscles to cramp. I didn't understand why it was so important they give it to him the amount they were giving him if it made him hurt. On top of that, the only solution from the doctor was to eat more bananas! I was not happy about that one and I did ask that they lower the dose. So he had a little more fluid then they wanted - he was in hospice!!
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Meatjeanne, check again on the Medicaid thing - if he qualifies for Medicaid, they are supposed to leave enough resources for the "community spouse" (you) to live on as well as the house and the car. You fill out papers or online forms with your assets, income, and expenses of the house you are living in. I did that for my mom when she could not navigate the second time she needed to for my Dad. Veterans typically have enhanced coverage options as well. Absolutely at least check with an eldercare attorney who knows Medicaid or at least your Area Agency on Aging and/or estate planner about all that. Hospice probalby does not even need to be in the picture.

Bella, yes - they do stop meds that they do not think are needed for comfort or quality of life. I had to go over it with them and let my mom continue to get her Sinemet so she could feed herself, but they did stop her antiplatelet that probably was not working anyways adn still wonder if that was right or not. I think we even had to pay for one or two meds that we wanted to keep. And I also got treated a bit like an intruder for not just going with the flow and letting them just do it all their way with out my input. But, that was nothing personal that they had to go through everything and approve him despite the other doc making the referral. They should have made allowances for your hurting heart though and not held it against if that you sounded critical and defensive though. It is not the least bit uncommon to feel more guilt and turmoil about a relationship that was less than it could have been than if it had always been good. I experienced that in spades with my mom versus my dad. No guilt, you have done what you can and then some!!

Diane - what on earth - what medication was causing pain and why would they not stop if you asked? You can request they call the doctor or call yourself, and even refuse the med if the actual reason they are giving it makes no sense, or if its side effects outweigh any benefits.
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I'm sorry for the loss of your dad. They probably kept giving him medicine, partly because they can bill Medicare or you. It's all about the money.
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Do not fret about your decision Diane You did the best you knew how and that is always the right decision. The help you could to manage without was made available to you. Your Dad unfortunately began to decline at the same time. This frequently happens and the hospice nurses see this and often this is the reason a patient is accepted for hospice care.
Yes your Dad understood the reason for hospice and it is often distressing when they are called in but that is not a reason to delay because they can bring great comfort and a sense of security. medicaid does usually discontinue certain services when the patient no longer makes progress or refuses to follow instructions. They also have very strict guidelines about approving services in the first place. For example I was told that only about 25% of requests are approved for tube feeding. Oxygen saturation has to be 88% or below before home oxygen is approved. The guidelines are pretty strict.
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I have mixed feelings about Hospice. At the time I signed my father up I thought it was the best thing since sliced bread. What I didn't consider was whether the additional help was a Godsend or a hindrance. My father was a little over 2 years out from a catastrophic stroke. He really wasn't improving much but he wasn't digressing either. I battled Medicare for 2 years to make sure he received physical, occupational and emotional support but there was a point where Medicare would no longer pay for the therapies - as far as they were concerned he would never get any better. They recommended hospice. I didn't think about how the mission of hospice would affect his mental health. Even though the additional help made it it easier for me, he took it as a sign that he was never going to get better. When all therapies stopped he went downhill. He was lucid enough to know that hospice was end of life care and and he eventually lost his will to fight. I had great help with Hospice - I can't fault them for doing their job with my Dad. I didn't really understand their need to give him medications that made him hurt (I asked why it was necessary if he was dying anyway - the response was that it was Doctors orders. Never understood why you would give medication that hurts and then have to give pain pills but in our pill happy society who knows). Anyway, my Dad reached a point where I could no longer lift him and assist him. We put him in a nursing home and he died the next day. All I can suggest is to think long and hard about the purpose of hospice and how it affect loved one. I have dealt with the guilt of wondering if I had waited to put him on hospice if he would have gone downhill as fast. As with all things when you care for someone else, you go over things you wish you had/hadn't done and wonder. In the mix you just prayed that you made the best decisions you could. Several months later I put my uncle in hospice and had a totally difference experience - if I based hospice on that one situation I would NEVER put anyone on hospice (of course, depending on need).
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Bellas all I can say is gather that last little bit of strength and call the other hospice. If your first encounter is similar to your current hospice leave well enough alone.What you have experience is not what hospice is all about. it should be the loving caring experience that Kathleen above described. As a retired hospice RN I can not in any way defend the horror you are experiencing.
You decide when to visit or not at all if you choose. i would however suggest going at least once a week to check that he is properly cared for, ie bathed, shaved clean Depends (or whatever you care to call them) ,no smell of stale urine,clean room etc. if you can look at his skin and take pictures of any bedsores or anything in the environment that disturbs you. You don't need to be an RN to see things that are wrong. Stopping drugs is a common practice and just giving those essential for symptom management so do not worry about that as long as he is calm and comfortable. When this is all over and you are rested I urge you to contact your state health department and share with them the what you have told us about this hospice
.After 40 years of abuse I am sure you feel this man should just rot in his own filth but you are a better person than that and feel the need to remain involved. Do not feel guilty about your feelings no one is responsible for the way they feel, We are only responsible for our actions and you are doing the best you know how for your husband. you will find lots of support her from people who will offer genuine love in the purest sense of the word. Another thread to post on would be :The caregiver and disfunctional famillies. The people there are mostly long term caregivers and do not focus on specific issues but ongoing life experience and provide the kind of support you so desperately need at this time. Blessings. come over and introduce yourself you will find a very warm welcome
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I am so glad to see this topic as the ALF where he was, said they had to send him to the hospital because he told them he had had a stroke. Four days later, the neurologist gave him a dz and said there was no treatment but he could order as many tests as I wanted, even a very expensive DNA test. I asked if any of those tests would change his dz and/or the outcome and he said they would not. He recommend palliative care and I agreed, seeing no need to charge Medicare for tests with no solutions. The palliative care person at the hospital called me and said she reviewed the chart and stated he qualified for Hospice and I should go that route. I was clueless that one must be interviewed by another person from the Hospice dept of the hospital. I felt like it was an inquisition by a seriously arrogant person that made me feel like I was trying to do something wrong. I told her it was the doctor and the the palliative care person that got me to this interview…didn't matter, she continued to tell me she would have to share his case with the doctor who is over the Hospice for the hospital and then they would decide if my husband qualified. She must have told me 4-5 times that if he got any better at 90 days they would 'boot him out' (my words) and then they would continue to check his condition every 60-90 days thereafter with the understanding that he had to meet certain criteria to stay in Hospice. I have been at this care taking by myself for 5 years now and my take away is that no one does what they say they will do unless you call and followup with them and document every single phone call. I cannot stand this hospice, the RN that sees my husband is rude and talks down to me (further proving that employees are a reflection of their manager, so I dread meeting the doctor who is over the unit). They were to call me and let me know the status after each RN visit, reassured me they would, met the RN face to face and was assured she would. I have yet to get a call but I now call them. Then…the ALF who have been saints called to tell me that Hospice had taken my husband off all his medications except the ones he has been on for anxiety and the miracle pill that keeps him from acting out (that took me 4 ½ years to get). The pills they took him off are ones that would be needed for quality of life, if he were to live out his remaining 76 years in 'good' health. I was so shocked that they did not tell me they were going to do that that I called them to confirm it and the gave me attitude and threw it all back on me to decide. Gracious, I couldn't decide life/death matters as a lay person but I called the prescribing doctors and they agreed it was ok for him to go off their meds but the process was exhausting emotionally…just another notch in my care giving 'belt' that further sucks the life out of me and my health. My husband has not been a nice man our whole long marriage (40 years), has no friends and his own son wants nothing to do with him. I just have done what needed to be done all these years but now, with his condition growing worse, I am falling apart emotionally with guilt. I always thought, since I have put up with his serious verbal abuse that only has gotten worse since his brain is turning into sludge, that at least, in the end, I would never have any guilt but I do, lots of it. The reason is the only place that would take him is an hour away and I cannot afford to go there on a daily basis but the RN and the SW that I haven't met but has called me twice and some of the ALF staff, all make comments about 'being sure that I must go over every day to be with him'. Not. They know he has no one else but me that will see him and I am just too tired and overwhelmed here at the end of this long journey to give more of myself. Anyway, hospice stinks but I am too tired to go through all the process of firing them and hiring the other one in town. Both sides of my family know he is in hospice and even though they can't stand him, I would think someone would ask how I am doing or even how he is doing but they don't, no one says a word, and they avoid me so they don't feel guilty or don't care about how hard this is on me either I guess.
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I worked in geriatric research and one project we worked on was indicator when an older person needs Hospice services. We did this for NIH. As a general rule older people did not have proper end of life care. I was fortunate to know when my mother needed hospice services and I did go through a religious hospice. I believe they where the first hospice in the country. They where wonderful. They brought medication, bed pads. Hospital bed and oxygen. Everything to promote comfort care. When I needed medication it was a phone call away. The nurse came 2-3 time a week and it is true. It takes very special people to work for hospice. CNA came 16 hrs a week. I had also hired a CNA privately. She was wonderful. Little box of medication that had Morphine, Ativan, Haldol which was awful for my mother. Suppositories for nausea and Tylenol and syringe without a needle. You just had to take drops and put it slowly inside there cheeks under their tongue. I never needed Scopolamine Thank God. Being a RN. I didn't agree with the medical director's way of medicating and his nurse didn't either. But, I medicated my mother the way I was taught. The doctor was my only problem. I knew him as a fellow but, never met him through hospice. The hospice nurses knew what I was doing but, never said a word to me. The social worker came once a week and called a couple of times a week. I had hospice for a full 6 months. My mother had a peaceful death. I heard later the doctor was gone and that was a good thing. Even if you are poor and no insurance this hospice is non profit and will take anyone. Many people make donations and my family made big ones. That keeps hospice going and able to take the poor. I have no regrets
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